Five things about Autoimmune conditions and me

I’m not an expert in this field but I’m trying to understand it as best I can. In much the same way that I set about researching information on my particular form of cancer, I’m now researching and learning about autoimmune conditions. I have them and they run in multiple generations of my family. Since none of my affected relatives are here to tell me about their experiences, I’m trying to piece it together myself. It’s a bit like looking for a needle in a haystack but so far I’ve discovered five things:

1. How many people are affected?

It’s difficult to find accurate figures on the number of people with autoimmune conditions. Estimates vary considerably. The American Autoimmune Related Diseases Association suggests 50 million Americans – more than twice as many as the National Institutes of Health suggest. That’s a significant difference. Most sources seem to agree women are more likely to be affected than men – that holds true within my own family. Overall, the prevalence of autoimmune conditions seems to be rising. As yet no-one really knows why.

2. How many autoimmune conditions are there and how are they diagnosed?

There are many autoimmune conditions – at least 80 to 100 and despite research, they can be difficult to diagnose. For some people diagnosis is made by accident when assessing a seemingly more obvious illness. That happened to me. For others, diagnosis becomes a process of elimination – which means undergoing many different tests to rule out common or more obvious causes until such time as a less likely cause is deemed the culprit. As a patient, this can feel frustrating and traumatic in equal measure, especially when the outcome always seems to involve more tests. This happened to me too. Fortunately my GP is not in the habit of passing things off as a virus or post-viral fatigue.

3. Does it run in the family or are the conditions linked?

With my scientific hat on, it looks likely certain autoimmune conditions are linked. Having one in the family might mean other members of the family can have the same or similar conditions. Having one condition myself might generate a greater likelihood of having another… Or not… because autoimmunity seems to be another a very complex area of medicine and quite poorly understood unless you specialise in this field. My level of science doesn’t extend to anywhere near the expertise required to get to grips with all of this. Even if it did, our propensity for focusing on specific diseases or groups of symptoms makes it possible to miss subtle links – hence the turbulent experience of diagnosis via a process of elimination.

4. Is it worrying?

None of us wants to be or feel unwell. Having unexplained and debilitating symptoms is worrying. Having test after test without any clear answers becomes far more worrying, even for those of us who’ve been through countless tests, treatments and operations before. Without solid answers, the hamster wheel of tests can eventually lead to self-doubt, questioning your sanity or convincing yourself you’re imagining it all. I only escaped this downward spiral because a very dear friend with CFS had similar experiences. She isn’t insane and hadn’t imagined her chronic and very debilitating illness, but for years an array of professionals told her there was nothing wrong, even when she could barely stand or stay awake.

5. Has it changed things?

It’s said with age comes wisdom and I’d like to live long enough to be wise. Surviving a very aggressive cancer didn’t grant me wisdom but I do think quite differently about life. My health dipped suddenly a few weeks ago and a plethora of tests ensued. It’s autoimmune, not more cancer. In my world almost anything is better than more cancer, even if it isn’t great. Pre-cancer I’d have ignored this latest health thing in favour of work. Now I have a more considered approach. Of all the rogue genes in my gene pool, ‘nine-lives-of-a-cat gene’ isn’t going to be one of them. I’ve spent enough time in hospitals to absorb the fact life is fragile. So I’m giving up the career I’ve worked my socks off for over the last 20 years because simply being here for my loved ones for as long as possible is more important to me than anything else. My work has been a buzz and somewhat addictive; stretching, fun, full-on and frustrating, usually in that order. I’ll miss that I’m sure. But in 2019 and for the first time ever I get to take a proper break, take proper care of myself, and get on with the business of living instead of simply existing.

If life zooms by like a bullet train, people along the route become a faceless blur. Why have a family album full of blurs when pausing for a while is all it takes to stay in focus, and experience the detail in full HD…?

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Trapped in a Well with a Crocodile (or cancer)

Have you ever been trapped in a well with a crocodile?

 

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ONE FALSE STEP… (Image: http://www.sundayobserver.lk)

Captive in a limited space, confined and confused by the darkness, unable to gain a foothold because you can’t see through the dense thunderhead all around you. Making sense of this foreboding abyss with its slippery walls, isolating silence and icey cold waters is petrifying… and that’s not all.  Somewhere in the well lives a crocodile. It’s in there but you have no idea exactly where it might be. It might be far below  or about to break the surface. It might be about to seize you in a death-roll or look you straight in the eye. It might bite you once then leave you alone.  You know you need to get out and all the while you imagine how powerful that crocodile is, you sense its huge mouth and razor-sharp teeth.  You want to break free yet you know the crocodile might just as easily  swallow you whole.

When I was diagnosed with an aggressive cancer in 2012 my relationship with my body changed.  Instead of seeing it as a safe haven, a place where my sentience could frolic, it became the well.  I was trapped inside and in there with me was a crocodile called cancer.  I knew there was no way out of the well and I knew a death-roll with a crocodile was a bad idea.  Losing part of my body was better than losing my life and so, for me, the journey through surgery and chemotherapy was better than letting cancer swallow me whole.

Whenever I could I tried to turn any negative thoughts into more positive ones. Having surgery meant removing the obvious signs of cancer from my body and that was a good thing.  Undergoing chemotherapy (something that frightened me because I’d witnessed my Mother’s experience) meant targeting any remnant – rogue cells that lurked in my body as yet unseen. Although the side effects were unpleasant, the chance to stop cancer biting me again made treatment  worth the time, effort and side effects I encountered.

We all have different views on our bodies, on our femininity or masculinity (because men get breast cancer too). We all have different views on what makes us who we are, which pieces of ourselves we love or loathe, the things that make us ‘normal’ or ‘a freak.’ In Western society it seems so much of who we are becomes entangled with how we look that any affront to our physical wholeness becomes an assault on the very essence of our being.

When faced with cancer the prospect of surgery means facing the prospect of never again being physically whole.  Keeping a sense of perspective when nothing much makes sense is important. I realised quite quickly that my life would  not depend on physical wholeness, but it would depend on eradicating the cancer that had taken root in my breast.  Viewed in this way the prospect of mastectomy also became an opportunity to prolong my life.

As it turned out, mastectomy was the correct choice. Aside from the cancer I’d discovered for myself there were areas of high grade DCIS and atypical hyperplasia, both of which had the potential to become new cancers in time.  Having exchanged one cancer containing breast for a silicon fake it seemed counter-intuitive to retain the “good” breast in the hope that the cancer crocodile would only bite me once.

Two year’s after my initial cancer encounter I was able to complete risk-reducing surgery – mastectomy and replacement of the remaining breast with another silicon fake.  I can honestly say I’m glad I did.  As research progresses we learn more and more and it seems DNA changes are already present in the healthy breast tissue of women with cancer. My family history made having breasts a game of Russian roulette. If anything, I wish I’d fought the system more rigorously to undergo risk-reducing surgery before finding myself facing cancer head on.

Its been a long journey. This summer will be four years since my original diagnosis and my trips to the operating theatre are still not quite complete.  In a few weeks I’ll be in for some revision work, things that need to be taken care of following the original surgery of 2012. In the grand scheme of things it’s very trivial, a small price to pay for the four years of life I’ve enjoyed so far.  I’ve learnt that my body is not invincible, that hidden dangers may lurk beneath the surface and things go wrong even if we do our best to adopt a fit and healthy lifestyle.  I’ve also learnt that I don’t really care about my fake breasts, my Herceptin damaged joints, or my lack of physical strength, I can exist quite happily with all those little niggles.  The things I care for most – my family and friends – can only be taken care of if I’m here so preserving my life was always going to be more important than preserving physically beauty, ‘normal’ femininity or bodily wholeness.

Cicatrix

  1. a scar left by the formation of new connective tissue over a healing sore or wound.
  2. a scar on a plant indicating the former point of attachment of a part.

We all gather scars, some more visible than others.  They mark the various knocks and scrapes we encounter as we make our way from childhood to old age. The grazed knee in the playground, the cut finger in the kitchen, the gashed hand in the garage – each serves as a reminder of our calamities and mishaps.

Yesterday the dressings protecting my newest wound were removed. It isn’t pretty.  Long and red it sports uneven edges, rough scabs and is filled with medical grade superglue.  Around it lies a fair amount of swelling and bruising, some blue-black, some yellow.  Tell-tale holes at the side of my rib cage (a modern vampire bite if ever there was one) signpost the point where the drains used to be. The complexity and scale of this surgery is easy to underestimate.

Once settled and healed I’m confident the reconstruction will be a good match for it’s opposite number. That scar has now faded to a straight, flat, thin white line. Little more than six or eight centimetres from end-to-end it is reasonably unobtrusive given it’s calamitous reason for being. Like the forty year old scar from a fall in the playground or the one in my heel (from treading on broken glass at nineteen), each cicatrix has its own story to tell, a series of events that led to its appearance and some lessons learned along the way.  An up close and  personal experience of cancer isn’t something any of us wants to learn from so prevention is definitely better than treatment as Angelina Jolie will no doubt attest. Surgery is a radical option but for some of us it’s the best thing science can offer right now.

I’m not a huge fan of Picasso’s art but one of his sayings is useful when reflecting on this experience: “Others have seen what is and asked why. I have seen what could be and asked why not.”  Being covered in permanent cicatrices, deconstructed and reassembled – none of it is pretty – but cancer and the chaos it creates is much uglier.

Written in the stars?

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Constellation: Leo

I confess I don’t believe in horoscopes but every now and then something comes up that might just hold a smidgen of accuracy. Today my horoscope says: “This week you are reconstructing something that was once deliberately dismantled. It will be a positive process.”

Prophylactic mastectomy could easily be classified as something being deliberately dismantled. In this case a left breast. Immediate reconstruction with ADM plus an implant is reconstruction (of said left breast removed and reconstructed on Wednesday afternoon). This week’s horoscope begins to sound quite plausible. “It will be a positive process.”  That’s such an open-ended statement. Does ‘it’ relate to the dismantling, reconstructing, both or something else entirely – there are a host of physical and psychological processes going on right now but are they positive processes?

After giving this a lot of thought the only conclusion I can draw is yes.

This surgery had the potential to resurrect so much that was difficult, painful and confusing, negative even. Being diagnosed with cancer isn’t a positive life event; my previous surgery was cancer surgery and it caused significant disruption in my life and the lives of my loved ones.  We are still recovering from some of those problems. This time around the procedure was broadly the same but the reasons are different. The next steps won’t (with luck) involve any further treatment.

I can’t change what’s written in the stars, or more precisely, in my genetic code but limiting its potential impact is another story.  Taking action is a hugely positive process. It is not without cost but what value do you place on the chance to live beyond 50 years of age, to see your child grow up, meet your grandchildren, enjoy your retirement?

Women with two or more close relatives who develop breast cancer at an early age fall into the high-risk category. Those who’ve already experienced the disease face an increased risk of another encounter. I tick both of those boxes and my first encounter was aggressive and high grade. Very recent research indicates the risk for women with long histories of familial breast cancer may be as much as 1 in 3 rather than the typical 1 in 8. I tick that box too. For people like me undergoing prophylactic surgery may reduce the risk by as much as 90%. Of course it’s important to remain vigilant because risk-reducing surgery isn’t a panacea, it doesn’t make cancer an impossibility in the same way wearing a seatbelt doesn’t make everyone survive serious car accidents.

In life there are no guarantees – never were – we just kid ourselves that we’re invincible. However the benefits of this process, of dismantling and reconstructing, aren’t just physical. For me some of the most positive aspects are psychological. No more annual mammograms that leave me fretting over the reliability of results. No more second guessing self-exams that might or might not have uncovered another anomaly. No more thinking of my own flesh as a time bomb waiting to go off (again).

For more than twenty years I lived with a question that I was never able to answer to my own satisfaction. The question: “Have I done enough to reduce my risk of cancer?”

For the first time in a long time I am able to answer fully and frankly: “Yes. There is nothing more I or anyone else can do.”